SOCIAL SCIENCES & ETHICS

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Tackling Issues Thru Community-Centered Research

Our Behavioral and Social Sciences Research team see every challenge as an opportunity.


Being nested within the basic science of our collaboratory helps us ensure that people living with HIV (PLWH) are co-creators of our research questions.


Their lived expertise helps us create results and recommendations that will help PLWH be better prepared to manage the unique situations they may find themselves in when joining a clinical trials related to an HIV cure.

We are invested in innovative approaches that empower our HIV community and other stakeholders and will deliver the support they need, when they need it.

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ACCEPTABILITY OF CGT FOR CURING HIV

Our investigation with a small sample of people in Seattle shows us repeatedly that cell and gene therapy elicits caution in people living with HIV.

Following the principles of community-based participatory research, the authors worked alongside the defeatHIV CAB in December 2017 to conduct focus group discussions to solicit PLWH attitudes, feelings, and beliefs regarding C&GT relevant to future clinical trials recruitment and practices.

Cell and gene therapy elicits caution in people living with HIV

Acceptability of Cell and Gene Therapy for Curing HIV Infection Among People Living with HIV in the Northwestern United States: A Qualitative Study

 

REVISITING THE 'STERILIZING CURE' TERMINOLOGY

AND THE IMPORTANCE OF RELYING
ON YOUR PARTNERS

Here at defeatHIV, we know that sometimes all it takes to change the world is a little support.

Our recent research that show aversion from people living with HIV towards the ‘sterilizing cure’ nomenclature. 


We call for more collaborations with people with HIV as partners to help define what would be a more acceptable terminology for describing an HIV cure.

Revisiting the ‘sterilising cure’ terminology: a call for more patient-centred perspectives on HIV cure-related research

 
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"WE'RE SCARED... AND BRAVE"

Cure is a new idea for people with HIV to grapple with; it has different meanings and different implications depending on people’s lived experience.

It is vital to know and understand the perspectives of people living with HIV on a cure, on the research conducted toward curing HIV, and on the factors that influence study participation.

"WE'RE SCARED... AND BRAVE" - dissemination event of our results

Why volunteer for an HIV cure study? A community group undertakes its own research to find out

Willingness to participate and take risks in HIV cure research: survey results from 400 people living with HIV in the US

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WHAT WOULD AN HIV CURE MEAN TO YOU?

That’s the question we asked in 2016 at the International AIDS Conference in Durban, South Africa.


Respondents wrote their answers on leaf-shaped pieces of paper. Afterward, we sorted the paper “leaves” into themes.

A word cloud was created from the 244 responses, and the words morphed into a tree. The word tree was unveiled in a poster presentation at IAS 2017.

The word tree captures the most common themes while preserving all the voices that answered our question was a great source of interest at IAS, especially for those living with HIV.

TREE OF LIFE

Music video of our booth in Durban

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